Don’t let the name fool you.
That’s the message from LorieAnn Wilkerson-Leconte, M.P.H, deputy executive director of the Catastrophic Illness in Children Relief Fund Commission, which was established by legislation in 1988 to be a financial resource to New Jersey families overwhelmed with medical bills.
“When our name was developed, I don’t think anyone foresaw how that would be a barrier for us,” she said, noting that when people see “catastrophic illness,” they think their child must have a rare disease or “intense” condition to apply for aid from the fund.
But in this case, a “catastrophic illness” is any illness or condition, acute or chronic, for which expenses are incurred that are not covered by insurance, state or federal programs or other sources – and that exceed the program’s eligibility threshold. “Other sources” include but are not limited to insurance contracts, trusts, proceeds from fundraising or settlements relative to the medical condition of a child.
Wilkerson-Leconte and the commission, which is chaired by Dr. Janice Prontnicki, who is director of the Division of Developmental & Behavioral Pediatrics at Rutgers New Jersey Medical School, urge members of state boards of education, school nurses and other stakeholders in education to spread the word about the fund – including the fact that it can help families with children facing medical debt stemming from a variety of problems.
Lawmakers established the commission after realizing families of all incomes may face high uncovered medical expenses for their children. It’s meant to help preserve the financial integrity of New Jersey families and their ability to cope with the responsibilities that accompany significant health problems in children.
The fund is a dedicated, revolving and non-lapsing trust fund collected from an annual assessment of $1.50 per employee levied on all employers who are subject to the New Jersey Unemployment Compensation Law. While several other states, including Massachusetts and Virginia, have such a fund, New Jersey’s is particularly well-funded as it has a budget of more than $10 million – of which $8.3 million is reserved to awards for families – because of a dedicated source of funding.
Since the commission granted its first award in December 1989, it has given out more than $195 million to help almost 10,000 families, Wilkerson-Leconte said. “In fiscal year 2021, we approved $5.3 million in grant awards, and that was from 220 applications,” she said.
She added, “I want us to wipe out our budget every single year. There should not be a dime left. I cannot fathom there are not more families who can benefit from this fund.”
While the fund serves the entire state, the commission wants to especially boost awareness of what it offers in Burlington, Camden, Monmouth, Middlesex, Hudson and Essex counties, where applications for aid have been low. “We are really trying to direct our efforts in those areas,” she said.
She noted that low application volume is likely tied to low awareness of the fund – as well as misconceptions about what it does. The pandemic may also play a role as the social challenges of coping with COVID-19 may be overwhelming to some families in need.
“My outreach plan is to reach out to as many people as I can and cast a wide net to increase awareness in New Jersey,” said Wilkerson-Leconte, who joined the commission a few months ago having previously overseen New Jersey’s Traumatic Brain Injury Fund. She formerly directed chronic disease interventions at the state Department of Health for 13 years.
“We have to find partners to overcome our name – that is the biggest hump to get over,” she said. “Who the fund is really for is for families experiencing medical debt.”
To convey who can apply for reimbursement from the fund, Wilkerson-Leconte likes to say, “any child, any condition, any income.”
To explain further, eligible expenses must exceed 10% of the family’s income in any prior, consecutive 12-month period, plus 15% of any excess income over $100,000. A child must have been 21 years or younger when the medical expenses were incurred, and the family must have lived in New Jersey for three months immediately prior to the date of application. Expenses can be from years ago. For instance, a child may have recovered from an illness a few years ago, but the family could still be loaded with medical debt, Wilkerson-Leconte said.
For a couple that is divorced or separated, the thresholds are based on the income of the parent submitting the application, Wilkerson-Leconte said. If divorced, the applicant must submit a copy of the divorce decree as it will often say what percentage of legal expenses each parent is expected to pay. So, for instance, if the mother applies for reimbursement and is supposed to cover 50% of medical expenses, the commission – if it approves the application – would only cover her portion of expenses.
Some of the most common medical problems that the fund reimburses families for include cerebral palsy, seizure disorders, visual disorders, obsessive compulsive disorders, anxiety disorders and when children don’t meet their expected development.
But the commission can also consider reimbursing families for some conditions that families may not immediately think of, such as substance abuse problems, asthma and post-traumatic stress disorder.
Moreover, there have even been instances when the commission has stepped in to assist a child who suffered an accident, such as a broken arm, when a parent had recently left a job and was not covered by insurance, she said.
Another type of coverage the commission can assist with – one that has become increasingly relevant in the context of the pandemic – is the need to provide children with mental health services, she said.
More often than not, a family that seeks help underestimates the expenses that they’re facing as a result of their child’s condition, Wilkerson-Leconte said. For instance, eligible expenses could include items such as transportation costs, home modification, and hygiene needs for any child over the age of 5.
If a child’s medical expenses exceed 10% of their family’s income in a 12-month period, the commission will review those expenses and determine what portion they will reimburse, up to $100,000 per 12-month period. Some expenses, like home modifications or speech, language or hearing therapy, have individual payment limits. Families that make more than 300% of the federal poverty level (around $83,000 per year for a family of four) are expected to contribute 1% of their annual income toward the medical expenses, unless the 12-member commission waives the requirement.
Once an application is received, a family is assigned a case manager from Special Child Health Services at the New Jersey Department of Health and an analyst at the CICRF state office to assist with preparing the application. Together, they address the needs of families, Wilkerson-Leconte said. “It really is a great model where families get this personal touch to make sure they are eligible and recover as much as possible,” she said.
Applications to the fund are confidential. Once the commission receives an application, it reviews it before making a final determination on eligibility and the amount of assistance. Approved grant awards are disbursed directly to medical providers to offset outstanding balances.
What You Can Do
In terms of spreading the word, school districts are encouraged to share information about the fund and what it does on its website, in school publications and via other forms of outreach, Wilkerson-Leconte said. School nurses have been a tremendous resource in sharing news about the fund, and they’re urged to continue to disseminate information, Wilkerson-Leconte said.
But the best way that school board members and school staff could help the commission is by talking about the fund at its meetings, she said. “That is where their sphere of influence is,” she said. “If you say something, the public listens to you. A link is good, but I still have to overcome this name – and it is always good to have someone qualify it.”
She added, “It is great to have someone hand out our fliers and post our links … but to have a person describe our program – that would be a game changer.”
Visit the Catastrophic Illness in Children Relief Fund Commission website.
Call its information line at 1-800-335-FUND.